We held a fundraiser event to get some answers about rare condition
Updated: Nov 9, 2021
Chantele and Cody DeBolt’s five-year-old son Ryder has a neurological disorder called chronic inflammatory demyelinating polyneuropathy (CIDP).
More needs to be known about this rare condition that targets the body’s nerves, says the mom of a Vulcan boy dealing with the condition.
A fundraiser dinner was organized on Saturday, May 26, 2017 at the Cultural-Recreational Centre (CRC). All proceeds went to the GBS/CIDP Foundation of Canada.
“The reason we started this (fundraiser) was actually because we were tired of hearing, ‘We don’t have any other answers — there’s not enough research of it, we have no idea,’” said Chantele.
The fundraiser was to help our family, as well as everyone else dealing with CIDP, get some answers, she said.
When Ryder was almost four, he started showing symptoms of the disorder, including paralysis and constant chronic pain, and it also affected his fine motor skills, said Chantele.
“He couldn’t hold a pencil anymore, he couldn’t hold anything,” she said. “He had gone downhill fast.”
It took months for Ryder to be diagnosed because CIDP is so rare, especially in children, said his mom.
Ryder, who’s in kindergarten at Vulcan Prairieview Elementary School, receives a protein infusion once a month at the Alberta Children’s Hospital in Calgary and also takes steroids every day at home.
“Unfortunately though, because there’s not a lot of research on (CIDP), the steroids have actually pretty much stopped working for him altogether, and also they create horrible side effects,” said Chantele.
The protein infusions wear off after two to three weeks, she said.
“So by the time that four-week mark hits, he’s back in pain again.”
But Ryder is happier since being diagnosed and started receiving treatment, although he does have his difficult days, said his mom.
“He runs around more — he wasn’t even able to walk for a while,” Chantele said. “So for him to be able to run around is a huge deal for us.”
She wants to get her son off steroids as quickly as possible, but unfortunately steroids are addictive. The infusions work pretty well, and a medicinal-marijuana lotion “seems to be the only thing that will actually completely take the pain away,” she said.
During the fundraiser, local musician Larry Vannatta were performing, and Izzy and Dick Ellis did the DJ.
Students of a local piano teacher were also performing piano pieces and singing, said Chantele. “And my son was performing twice,” she said, adding Ryder sang and played the piano.
The Vulcan Lions Club put on the dinner, and the Lionettes were providing desserts and drinks, said Chantele. Ashlee Beck provided linens and decorations. Volunteers, mainly friends and family, were also helping out.
“Pretty much everything that we’ve set up has all been completely donated,” she said.
Tickets for the fundraiser were $25 each. There were no cost for kids four years old and under.
The dinner was scheduled to start at 5 p.m. at the CRC. Entertainment lasted until 7 p.m., after which the doors were open to the public for a free family dance.